Three EVOKE members – Dr. Matthew Bietz, Dr. Judith Gregory, and Dr. Scout Calvert – collaborated with researchers at the California Institute for Telecommunications and Information Technology (Calit2) at UCSD (Kevin Patrick, PI) to conduct the research and produce the report.
About the Report: Health-related data is being tracked more and more as the number of wearable devices and smartphone apps increase. Our report, Personal Data for the Public Good: New Opportunities to Enrich Understanding of Individual and Population Health, examines attitudes towards personal health data from the individuals who track personal health data, the companies involved in self-tracking devices, apps, or services, and the researchers who might use the data.
- Individuals were very willing to share their self-tracking data for research. However, the dominant condition (57%) for making their PHD available for research was an assurance of privacy for their data. Over 90 percent of respondents said that it was important that the data be anonymous.
- This study showed that the current methods of informed consent are challenged by the ways PHD is being used and reused in research.
- Researchers are enthusiastic about using PHD in research but are most concerned about the validity of PHD and lack of standardization of devices.
Health Data Exploration Project: http://www.calit2.net/hdexplore/